Avatar universal

CIDP? Spinal Tap? Quix- If you could help I would appreciate it...

Hi Quix and Everyone else-

About a month ago I posted on here regarding MS like symptoms with clean MRI's.  Well I have had new MRI's done (5 now brain, cervical, thoracic, lumbar, right shoulder on a 3T!) and for the most part they were fine.  There were no lesions, however there was a torn rotater cuff in my shoulder (he did my right shoulder b/c my arm was so weak) and what strikes me and him as wierd is that there is a develepmental sac at the very bottom of my lumbar spine.  Does anyone know anything about what that is?  I heard all this via the phone.  He doesn't think it is related because of my weakness in multiple muscles so he is sending me to a neuro that specializes in CIDP.

Basically this has been going on for two years.  I am a 22 year old female who was very athletic and in shape and now I can barely lift my muscles on my right side or hold resistance (was my stronger side at one point).  I have twitching and tingling as well (but rest definitley seems to help).  Mainly my muscles (and my neck) feel like dead weight.  They feel tight and have a painful ache to them.  My reflexes are gone everywhere but my feet and I have neuropathy in my hands and feet.  

I am trying to get an idea of what my appointment with this specialist will be like as well (my sister might come from 4 hours with me if it is needed).  It is next Wednesday and my last neuro said he would rather this specialist take care of the spinal tap and EMG.  If I am to get a spinal tap how long does it take to get in to one?  A day, that day, a week?  

Uggh... I'm back at the frustration point again (it is quite a rollercoaster ehh) and would love anyone's feedback...
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Avatar universal
I too had so many blood tests and about half of them had to be looked up in a book.  One that was ordered was the nuero panel.  But he came back with a ton of ideas after that test, so maybe it will help lead them to some idea about where to begin.

Good luck and hope you start getting some answers too.  If he's giving you tests and others are asking, the good thing is, that means he probably believes you and is searching for an answer.

It's been awhile since I haven't gotten a diagnosis, it really helped when my nuero told me that my condition is very real, we just have to keep testing until we find out what the condition is.  Seems that your new nuero is behaving the same as mine.  Hang in there.

Happy Birthday
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Avatar universal
hey quix-

so i went to the doctor.  it was really weird though!  my muscles and my reflexes were behaving much differently then they had for my last two neurologist visits (with a different neuro who had sent me to this new guy).  my reflexes seemed pretty normal except my right arm they were absent.  the last time none of  my reflexes were there except in my feet.  then when he tested my muscles my strength seemed pretty close to normal.  my appointment was at 9 am and all of my issues definitely get much worse by the end of the day.  my other neuro appts have been in the afternoon or i would have to walk a while to them.  usually i can barely withhold any resistance on the right side.  which is frustrating because lo and behold that afternoon the issues defintitley grew.  the neuropathy was still there though.

he did the ncr and emg and they both came back fine.  which is good. but i would like some awnsers.  he is putting me on some medicine that he said would make me tired but help with nerve pain  (i'm already so tired though).  he took more bloodwork and i know he is checking my b12 and might get me some shots, but the lab tech was saying why is he testing all these wierd things and had to look up the test in a book so i'm not sure what else he is looking for.  he also took xrays of my lungs.  and when i asked him why, he said he didn't want to scare me???? and i gave him a seriously? look... and he said the name, but it was so long i couldn't remember it.... any ideas?  i feel like it started with an s or a p.... vague i know...

he seemed to think that everything is so slow moving that it couldn't be cidp (also my lack of nerve damage seems so too).  he seemed intrigued but not overly concerned.  i am very frustrated again.  i don't want anything bad, but i'm so over this.  i'm 23 (yesterday was my bday :)  and i just know my muscles and my body.  i quite honestly can't afford my insurance or the doctors, so it isn't like i want the attention.  i just want something to treat and to move on.  

my next appointment with him isn't till october as a follow up, but he is going to call me about my results.  

i would love any feedback.  

oh and you asked about heat.  it doesn't bother me horribly. my muscles feel heavier and i feel more tired but i can still function.

i hope your new reevaluation of your vertigo is going better and onetri i hope you are getting some answers.  
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Avatar universal
I got the results of the NCV for my upper extremites and the conclusions were:

Bilateral carpul tunnel and guyon tunnel syndrome

Left Cubital Tunnel Syndrome.

The carpul tunnel is supposedly severe enough that surgery is an option, though I feel almost no pain in my wrist, only in the Left forearm.
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Avatar universal
I only had one post so it would be very easy to miss.

I don't know what chiari malformation is.  I did leave out a little bit though, that the more i think about it the more it seems to be coming back around.

Four years ago, Jan '03, I had a terrible car accident.  My entire back went into shock and the muscles locked.  I was paralyzed for a few days and nearly paralyzed for a few months.  I couldn't move my legs more than 1 inch and my arms were at times too heavy to hold at my side, let alone lift.  I also had a lot of neck problems, until March of '05 I couldn't hold my head on my shoulders, though it never hurt.  My chiropractic physician was the first to adjust me and give me exercises that worked to get my head back on my shoulders.  I also was, at the time of the accident, found to have lordosis, kypohosis, and scoliosis.  All minor, but apparently attributed to the crash and the muscle locks.  After a few months of physical therapy and chiropractics I was back to walking.  A few more months and I was running again.  In June of '04 I completed my first marathon and then the next summer began with triathlons, so I didn't give much thought to the car accident again.  I know I did a lot of damage to my back, and had to see a chiropractor every other week to help work with my posture, but I thought of it more as improving my performance and posture than fixing something that was still wrong from my car accident.

The neurologist believes that this doesn't really explain the current conditions, because a lot of the neuropathy is recent and was not continuous or even present three years ago.  He does, however, think that the posture and back problems caused by the accident are masking what is current and maybe even aggrevating my condition.

I don't know if this has any relation.
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147426 tn?1317265632
You have been checked for Chiari Malformation haven't you?  The "cord being under tension" brings to mind a condition called tethered cord.  Have you had back surgery?  Also bulging discs which do not impinge on the nerves would not be the reason for your very abnormal nerve testing, as I'm sure your doc told you.

I don't know if the brisk reflexes rule out CIDP, but it wouldn't hurt to ask your neuro anyway.  It's so rare that many docs don't think of it.  If he thinks it's possible, the next step would be a spinal tap, probably guided by fluoroscopy.

With the diffuse damage to your neuromusclular system, I'm not surprised you wobble now.  I can't tell if that is dizziness or weakness.

I've never seen a post from you on the MS Forum.  I'm sorry I missed it.  You're welcome over any time.  We deal with all sorts of people in the middle of a work up in which MS is a possibility, whether it turns out to be the case or not.  we're a homey group and a lot more personal than here.

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Avatar universal
Thank you so much.  You are really a lifesaver for me.  Sometimes I feel like I'm going crazy cause it's so sporatic that people in my life believe that I'm milking it, though my neurologist said this is a very real condition and he's afraid that more is wrong than what I present him with because on both NCVs/EMGs I had more damage indicated than what I had been complaining about and seemed to have no idea.

I'm only responding on this forum because of the questions, but I am also over on the MS questions too.

I had a CT scan of the pelvic region with and without contrast and an MRI, same, of the lumbosacral region.  Both appeared fairly normal.  The radiologist indicated that they were normal findings, but the neurologist had said that it appears I might have three bulged discs L5-S1 being the most severe and detected by the radiologist.  Those none of these discs appeared to be touching nerves.  The spinal cord apppeared to be in some kind of tension, according to the neurologist.  The CT scan indicated a small air pocket, not uncommon to surgery, according to the neurologist.

I have demonstrated muscle weakness and assymetry, the left is worse than the right.  The reflexes were between hypersensitive and normal.  They were suprisingly fast, considering the NCvs indicated slowing nerve conduction.  I'm 26, and they indicated the speed of someone in their 40s.

I'm not sure about the balance testing, because I can't remember if he tested that, though I know my balance is not what it once was.  I used to take kickboxing also and could balance on one foot for 15 minutes.  I wobble now.

I had another neurologist appointment this week.  He had stated that he doesn't believe it is MS, but that it could be very very early signs, that would not be detectable as of yet.  Though he feels it was something brought on by physical trauma to the body (labor and delivery/surgery).  He has ordered an MRI of the cervical spine.  I have also been having abdominal pain when going to the bathroom, and the bladder specialist I saw conducted a quick test.  He found that I did not lose neuromuscular control, and that the muscles are actually quite strong for what we suspected, but believes that adhesions might be causing the bladder to be reshaped.

I hope you feel better and I'm sorry you dont' feel well.  Do know though, that this does touch people.  Most of the people on this website are looking for answers to complicated questions when let down by the medical profession.  You give them hope, something that is so desperately needed to get well.
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147426 tn?1317265632
I wanted to talk with you because in my further reading about CIDP I found that MS-like fatigue and heat intolerance are both seen in it.  It would make sense given that heat is really detrimental to the functioning of demyelinated nerves and that is the problem in both disorders.  I reread your comment.  Are you bothered by heat?

What the contrast does in the evaluation for MS lesions is it shows the inflammation whcih is associated with new or reactivated lesions.  It should still show older and scarred lesions. So it might miss small newly, demyelinating ones.  Yes, the T3 is the best machine now available.  That's when my lesions finally showed.

I really appreciate your comments.  I should admit that helping here onthe forums, which is something I can do from home, helps me feel useful.  After I lost my ability to practice, it was the feeling of uselessness that was the worst to handle.  I got over the lost of stature (of feeling important in people's lives) but I never got over just taking up space in the world.  So, I'm afraid that I get ever bit as much from the interchange on the forums as I might possibly give.

The vertigo is pretty much a constant in my life.  It is rarely better and often worse.  I had to retreat from answering so many questions on this forum, because I was doing so much research to respond to some many varied topics.  The reading made me very sick.  So I'm sticking now to things I already know something about and to the MS Forum, where I am very willing to keep learning more.  That has come to include CIDP.

The tap is really not a horrible thing to go through for most all people.  the anticipation is much worse and the headache, if it occurs, can be a bother.  Just be very well hydrated, drink something caffeinated and stay flat as long as possible.  I will have you in my thoughts so I'll be with you.  They go into the spinal canal well below the cord.  The area that they enter has free moving nerves that are traveling to the level that they will exit to the body.  They just move out of the way during the tap.

Let us know how it goes, and you're still very welcome over on the MS Forum.  Once we bond with you you're wecome forever.  Big ((HUG)) for tomorrow, Quix

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Avatar universal
hey quix-

although i don't suspect ms due to my type of symptoms (reflexes and heat issues).  i was wondering if it is an issue if i have never had any mri's with contrast?  my mri's were on an alpha 3t though and i know that is good.  

just curious.  :)
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Avatar universal
hi quix-

thank you so much for getting back to me.  i wanted to let you know what happened, but all these mri's have been dragging out!  

i am very interested in finding out what these next two tests say.  my last neuro wanted the neuro that specializes in cidp to do the ncs.  

a timeline is a good idea.  i have copies of all of my numerous reports and doctor visits (or at least most of them).  i feel like this has been a full time job!  i think similar to many people i see with the frustrations of ms issues, i started to feel crazy and took an entire year off of looking for help because i thought i was losing it and now i can barely lift my right leg with a hand on it when it used to lift 50 pounds more then my left.  

i'm not that worried about the spinal tap.  if anything i just want it done.  i just really wanted someone with me and my family doesn't live that close.  my sister is actually coming to my neuro appointment now and i'm hoping they will be able to schedule me for a spinal tap within the next two days.  it actually may end up being my birthday present.  

the sac on the bottom of my spine threw me off.  like i said i don't know much about it yet, besides what i told you.  but i did read that there are cases of spina bifida that are present in many people but don't go noticed until mris.  although they don't cause issues in those cases, i got a little nervous about that. my uncle had the very severe case of spina bifida.  

i would describe the way my muscles that are affected as heavy as well.  they also feel like they always need stretched and are never satisfied.  i have also read that pregnancy can flare the issues of cidp, whereas with ms they seem to be alleviated.  also usually the onset is from some sort of an illness, vaccine, or surgery which is something that you had with your c-section.  it is definitley something worth mentioning and looking into.  my neuro here is very good, and he has only seen one case in twenty years of his practice.  that is why he is sending me to a neuro who specializes in cidp.  

quix-  how is your vertigo these days?  i like to read about how your doing even though i don't ask i pray for you.  i hope you get better and want you to know that you ease so many minds by actually giving your opinion and knowledge.  

wednesday morning bright and early is my appointment.  i will try to keep you up to date as soon as i can.  
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147426 tn?1317265632
Hi, I promised I would tell you what CIDP is.  I read your post and see why you want to be tested for MS.  Basically, you have received the first major test and another that gives some good information.

If your MRI's were done with and without contrast and were negative.  The doc's need to proceed with the workup depending on what they found on physical exam.  Do you know if they found any abnormalities?  Did they document muscle weakness?  Are there any areas of abnormal sensation?  

What were your reflexes like?  Hyper or decreased/absent?

Any other abnormalities like a +Babinski or a +Romberg (balance with eyes closed) or problems with finger to nose or with alternating hand movements?

There is a group of nerve disorders called CIDP - Chronic Inflammatory (or Immune) Demyelinating Polyradiculopathy.  These often follow an infection or vaccination.  I'm not sure if they are more common after childbirth.  Most auto immune disorders are.  The nerves that are involved are the peripheral nerves.  The ones that have left the spinal cord.  They suffer demyelination -similar to MS.  The most common form presents in the lower extremities together and progresses to include the arms, but some forms present the opposite was and are not symmetrical.  Some forms are purely motor and some include sensory abnormalities.  The MRI's are usually normal or near normal.  The tendon reflexes are usually very decreased or absent.  And the NCS show marked slowing of the nerve conduction velocities.  (In MS they are usually hyperactive).

CIDP is far more rare than MS, but it is also underrecognized. It is similar to a disorder called Guillain-Barre Syndrome which is a more acute disease of ascending muscle weakness following viral infection, vaccination and other triggers.

When  the neurologist tests they go "where the money is".  Your nerve tests are VERY abnormal for someone who has not been ill that long if it were MS.  So the first tests they do will be aimed at the causes of nerve damage and muscle weakness.  They may send a wart-load of blood tests and they very well may want to do a spinal tap.

I am a physician disabled by vertigo and MS.  I usually hang out over on the MS Support Forum if you want to answer my questions or ask more of me.  I would very much like to know more about your symptoms and how this all presented.  Also as you get more information from the testing I'd appreciate hearing how things are going.  I will check back here, tho, too.  Hope t hear from you.

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147426 tn?1317265632
I'm sorry, Chris, I was thinking you had already had the Nerve Conduction Studies, but it was the other poster.  The new guy will definitely do those if he thinks youmight have CIDP, because they provide the best information for it.  Quix
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147426 tn?1317265632
Hi, I'm back.  I'm really sorry for forgetting to get back here and do what I promised.

Overthis - As you know the MRI are typically negative in CIDP, though they can show some non-specific white matter changes.  Your diffusely positive NCS's would be characteristic if they showed significant slowing of the conduction velocities.  Do you know?  You need to get the hard copy of the report.

About the developmental sac in the lumbar region.  That is not descriptive enough for me to know what it indicates.  Developmental abnormalities are not unusual in that area.  They are usually assymptomatic, and it would NOT account for your upper extremity problems.  

As for seeing the specialist neurologist.  He will want to see your timeline write up of when and how your symptoms appeared.  It should be in short paragraphs with the dates leading the paragraphs.  Not too wordy, but descriptive enough so that it explains the problem, for example.  

"November '06 - Right hand began to feel weak.  Couldn't grip things that used to be easy to hold.  Noticed increased weakness right hip flexors.  Couldn't lift foot to step on stairs.  Both problems last for 5 or 6 weeks."

Something of that sort.

You will need a spinal tap.  In CIDP it will usually show elevated protein.  He probably will schedule that test.  You will want to be well hydrated and stay FLAT for at least an hour -whatever they  say.  Bring a caffeinated soda to drink.
The vast majority of taps do not cause problems.  You hear about problems here because of the type of site it is.  People don't usually log on to a neuro site to exclaim that their spinal tap went well. lol.

I continue wishing you the best.  I'm spending most of my time over on the MS site - which I think should include CIDP.  It's a demyelinating process like MS, but of the peripheral nervous system.  It would be a much better diagnosis, though, because most forms respond well to treatment.  That should be encouraging.

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147426 tn?1317265632
I'll be back later to discuss CIDP.  It may well apply to you too.  Quix
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Avatar universal
What is CIDP?

I am a 26 year old female.  I have been having a lot of muscle problems since the birth of my son back in November.  I have numbness and heaviness in all my limbs (started with the left leg, then left arm, and recently started in the right side too).  I had two EMG/NCVs.  One on my left lower extremity and lower back and every muscle he tested demonstrated nerve damage.  I was told three nerve groups compensated for one major nerve.  The other was on my neck and upper extremities and the neurologist (a collegue of the first) found damage in a nerve running through my elbow.
Two gyns from the same practice want me to be tested for MS, but I don't know why the neurologist I'm seeing hasn't tested and seems to believe this is not it.  He seems to want to rule everything else out first, but can't get over the fact that all these symptoms started after the birth of my son. (14 hours back labor and an emergency c-section).

I too was an athlete before all this happened.  I'm just looking for new directions and new avenues to try to find out what might be wrong, and what you wrote sounds a little similar.  All my MRIs/X-rays/and CT scans come back normal, but not one of my two EMG/NCvs came back normal.
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147426 tn?1317265632
Hi, I'm planning an answer later on today.  I was wondering what was happening with you.  Quix
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